Later on Jack’s Birth Day…

I’ve only written the title and already I’m crying. I think it’ll be a long time before I can think of those later hours without tearing up.

An hour or so after Jack was born Tj took Max to the hotel to let him nap. He fixed Max’s bag and Heidi came to pick him up. Tj got some breakfast and came back to the hospital to be with Jack and me. He got on the computer a little, sent out an announcement, I think. Time passed.

At 3pm Dr. Brazinni (sp?) came in to circumcise Jack. He said he wanted to look him over and then he’d take him out. I remember talking to Tj while the doctor looked over Jack. I could see them out of the corner of my eye…everything was normal. Then the doctor said he wanted to show us a few things. I didn’t think anything of it. Tj says that’s when he thought something might be wrong. The doc started out by saying Jack’s eyes were slightly slanted and had an epicanthal fold. I think he mentioned something about an Asian look…I remember joking with Tj…saying ‘sorry, sweetheart’. I had no idea how serious things were about to get. I was still euphoric after Jack’s birth. The doctor mentioned several things: Jack’s eyes, small and low-placed ears, flat back of the head, pinkie finger shorter than normal, single crease across the left palm, and his big toe separated a little from the other toes. He said it might be something or it might be nothing, but it could be Down Syndrome. I remember thinking that he sounded so nonchalant and he didn’t seem to be making a big deal of it, I decided not to worry until he said he thought Jack had Down’s. He talked for a little while longer, about physical limitations of Down’s, testing, etc. And then he said he thought Jack did have Down’s. I couldn’t believe it. I felt like the outside world just stopped and time only moved in that little hospital room. I just wanted him to shut up so I could call my Mom. That’s the first thing I wanted to do. Call her and ask her to pray for Jack. My poor little baby.

He kept talking. He said they would take some blood for a test that would tell us definitively in a couple of weeks if Jack had Down’s. He said that 50% of Down’s kids have heart problems and they wanted to run an ultrasound to check on him. I don’t really remember much of what he said after that…I was just waiting for him to leave. I looked at Tj to let him know I was hanging in there and to see how he was doing. He made eye contact with me, but we were both just shell shocked.

The doc finally left and Tj almost immediately called my Mom for me. It hadn’t been too long since I’d called her to let her know about Jack’s birth. She was very serious, of course, but it was so good to hear her voice.

It’s kinda funny…I still categorize things into before and after we heard the news. It amazes me how different my life was back then. I’m somewhat resentful that I only had Jack for 10 hours before Dr. Brazinni came to talk to us. I want those hours back. I want my perfect baby back. I want to not know for just a few more hours.

My sister’s boys were diagnosed as mentally retarded at 5 years of age. Before I even got pregnant with Jack we talked about her boys and she said she wished she’d known something was wrong earlier…I said that I wouldn’t want to know early. I told her that I hadn’t gotten the Down’s testing done when I was pregnant with Max because I would never have an abortion and there was nothing that could be done to help the baby before his birth, and Tj felt the same way. Jo said that after having her kids and not knowing for so long that something was wrong with them she’d want to know as soon as possible so that she could adjust to the idea. I said that I’d just worry during the remainder of my pregnancy…and since nothing could be done I’d rather be happy during my pregnancy. Now it turns out I have the perfect opportunity to see if my hypothetical feelings were what I actually felt. They are. I’m glad I didn’t find out until after he was born. I wish they wouldn’t have known so soon. But of course it’s better that they did so that we can get him help as early as possible. I guess the final answer is that there’s never a good time to find out that something’s wrong with your baby.

Oh how this breaks my heart. I’m so sorry for Jack. I love him so much and don’t want anything to hamper him. Of course if he had to have some sort of handicap Down’s is one of the easiest to have. There are so many worse things in this world…and there is so much known about Down’s and so many programs to help him. Every time I think we have it hard I know that there are others with much harder handicaps to bear…but I’m getting off track here. Back to that day.

At 3:30 we met with the Pediatric Cardiologist to look at Jack’s heart. After a 30 minute ultrasound Dr. Zerwacki said that he had 4 holes in his heart, ASD, VSD, PDA, PVS. He felt that all of the holes would close up on their own between 2 weeks and 2 years, and one of the holes was closing up as he watched.

Tj and I just kept saying that this sort of thing didn’t happen to us. It’s the sort of thing that happens to other people. We just couldn’t believe it was happening.

Thursday they took his blood to have a karyotype done (this would show for sure if he had Down’s). At first it seemed to me that it would be almost a betrayal to Jack to pray for him not to have Down’s. I think I was trying so hard to prove that I loved him no matter what that it almost seemed wrong to wish he was different. My life has always been so good…God has blessed me so much always that I didn’t want to seem ungrateful about what He had given me. I kept thinking of Job and how he said can we accept the good from God but not the bad? I didn’t want to be that way. And any time I wanted to ask God why did he give Jack Down’s I just thought of how wonderful a child Max was and how I often thanked God for his wonderful gift of Max…and how could I thank him less for Jack…another wonderful gift? After a few days, though, I thought about Jesus…the few days before he was to be crucified he prayed for God to take the cup away…and so I started praying for Jack to be whole.

Thursday (two weeks later, the 21st) we got the results that Jack does indeed have Down Syndrome. It’s still hard for me to believe that this is my life from now on. I don’t want to sound selfish…after all Jack is the one with Down’s, but I really don’t have any idea how this will affect my life as a stay-at-home mother. There are so many things about Down’s kids that I didn’t know…they typically start therapy at two months of age, they’re prone to lots of physical problems, Jack had to have some tests done to check his thyroid, heart, hearing, eyesight, etc. Their immune systems are weaker than other babies so they’re much more susceptible to infectious diseases.

There was a big debate about when we could bring Jack back to Turkey. Dr. Hanson (in Turkey) said that they didn’t have the resources to care for him, so we should just go back to the States from Germany. The docs in Germany said that physically he’s a healthy boy so we should just go back to Turkey and take it from there. We finally did get to come back to Turkey and it was so great to get back home. We’d been cooped up in that little hotel room for a month…it was nice to have our things again.

We are very fortunate…physically Jack is a normal baby. Many Down’s kids have a lot of trouble or are unable to breastfeed…Jack has never had that problem. He even takes the bottle pretty well (as long as the cereal isn’t too thick). We did have to take him to the local hospital to check his heart. The government sent us with a translator to the University Hospital for an echocardiogram. God has been so good to us…at 1 month 11 days 3 of the holes had closed and the last one was less than a millimeter…the doc said that 30% of people walking around have that kind of hole in their hearts. She felt that the hole would also close up shortly and no follow-up was needed.

Just a few days before the hospital visit we started getting home visits from Holly, the Early Childhood Special Educator from the base. I really like her and think she’s good for Jack. She comes every week, and last week the Physical Therapist (Maria) came with her. Maria will start coming to the house twice a week starting this week. According to Maria (and the other doctors we’ve talked to) physically Jack seems to be a normal, healthy boy. I asked Maria why they’re still recommending us to return to the States before our tour is over and she said it’s because we can’t be sure Jack will continue to develop at a normal rate…and by the time we realize he’s falling behind it may be too late. If we were in the States Jack would be being seen by an Occupational Therapist…and one who’s seen many Down’s kids. This base just doesn’t have the resources to help Jack. Tj’s heard about a job in Illinois with a report date of Oct 31st so we’re trying to see about that job.

Well, I guess that’s about all of the big update. Hopefully now I’ll be able to post about the little stuff of our days. We’ll see.

1 Comment

Hi Ellen,
Thanks for posting…I can see from your writing that you did feel the rug pulled out from under you, but I am praying that you all are adjusting now. You certainly sounded well when I spoke to you last.

I wonder if/when you will understand the story about the lady who thought she was going to Paris to see the Eiffel Tower but ended up in Holland and was able to enjoy the windmills and tulips instead. I’ll be praying that for you.

Take care and please give Max and Jack kisses from us. We miss you,
Luci